We had her wonderful event 3/28 with the Tim Orth Foundation and 12 other wonderful families who got some financial assistance towards the medical expenses. It was such an honor to be a part of that event and it was a great evening! Thanks to all of you who came out that day and supported us!!
We went back to check her weight last week due to her not gaining anything in the last 4 months and we were questioning celiac. Guess what?? SHE GAINED 1.5 POUNDS!! We finally have an eater on our hands. So, our MD has no concerns about her growth at this time.
She has been working hard in therapy to try to start doing some weightbaring. She uses a stander during sessions and will be getting one to take home soon. In a few months, they will be working to get a gait trainer from our insurance but want to be sure we get the best one for Dylann. She definately seems to want to stand up. She will also be starting pool therapy after she heals from her May surgery.
We still are planning to go to Philadelphia 7/5 to see the expert. I am not sure if we will continue treatment out there or not at this time. I really want him to see her and let us know what his treatment plan would be for her knees and hip then we will go from there. Other than that, we have just been doing alot of talking and praying about what to do regarding her hip. No matter what doctor we see there are risks. No matter which one we see, the preferred time frame is to do this major surgery between May and November. No matter what doctor we see Dylann will need to be in a full body cast (arm pits to toes) for at least 12 weeks. This will take alot of changes for our family. She will not be able to go to daycare and if one of us takes FMLA to be home with her, we wont be able to pay for her spot to hold it. So, we dont know where our lives will be in the next 3-6 months. More to come!
